About This Site

The design and development of this website on end-of-life care for children was funded by a grant from the Texas Cancer Council. This site provides overviews of the essential components for providing quality care, new interventions that promote support and comfort, and methods of care delivery that consider a family-centered approach to care at the end of a child’s life.

The contents of this site were authored by Melody Brown Hellsten, MS, RN, CPON; Marilyn Hockenberry-Eaton, Ph.D., RN-CS, PNP, CPON, FAAN; Donna Lamb, LMSW-ACP; Christine Chordas, MSN, RN, CPNP; Nancy Kline, Ph.D., CPNP; and Sarah J. Bottomley, MN, RN, CPNP, CPON.

Expert reviewers from Baylor College of Medicine, Houston, Texas; Texas Children’s Hospital, Houston, Texas; and the Project Advisory Committee Members helped to ensure comprehensiveness and accuracy of the content and the site. Donna Wong, Ph.D., RN, PNP, CPN, FAAN a world-renowned nurse expert served as a consultant and reviewer for this work. Bonnie Minter, MS,RN,CPNP and Craig Hendel, M.D. who are experienced pediatric hospice care providers, also served as reviewers for the content.

The interviews that appear as video clips throughout the site were conducted by Ernest Frugé, Ph.D., Assistant Professor, Department of Pediatrics, Section of Hematology/Oncology, Baylor College of Medicine. Dr. Frugé interviewed Douglas Strother, M.D., Assistant Professor, Department of Pediatrics, Section of Hematology/Oncology, Baylor College of Medicine, and Melody Brown Hellsten, one of the site’s authors. Dr. Strother and Ms. Hellsten provided the health care providers’ perspectives on end-of-life care for children.

Dr. Frugé also interviewed Janice Wheeler, M.Ed. Janice Wheeler is Founder of Project Joy and Hope for Texas, a nonprofit organization dedicated to promoting quality pediatric hospice care for children with life-limiting illnesses and bereavement support for grieving families. Having cared for her teenage daughter, Valerie Grace, at home with the help of The Children’s Program at the Hospice at the Texas Medical Center, Janice understands firsthand the end-of-life challenges that children and their families face.

Copyright and Permitted Use Information

Baylor College of Medicine holds the copyright for this site as it is fixed in this medium. The contents of this site are copyrighted by the Texas Cancer Council. The children’s art featured in this site are owned by and copyrighted by Texas Children’s Hospital. You are authorized to view, copy, download and print materials on this site subject to the following terms, conditions and exceptions:

  1. The materials are to be used solely for personal, noncommercial, informational and educational purposes. If you would like a copy of the End-of-Life Care Handbook, it is available in a PDF file in the located on the bottom frame of this site. Individual pages may be copied using the “print this page” feature located in the lower left margin of each page.
  2. The materials are not to be modified. They are to be distributed in the format provided.
  3. The copyright management information or other notices are not to be removed, changed or altered.
  4. The site design, layout and individual elements are not to be reproduced, copied or redistributed except as listed above in item number one.

As new scientific information becomes available through basic and clinical research, recommended treatments and drug therapies also undergo changes. The authors and reviewers have made every effort to make the information presented in this website up-to-date and accurate in accordance with current standards and available research materials. The authors and reviewers are not responsible for errors or omissions or for any consequences that may result in the application of any of the information presented. Only trained health care providers in accordance with approved professional standards should apply any practice described in the information provided. Health care providers are advised to always check the latest FDA-approved information for changes and updates regarding dosing and contraindications before administering any prescription drugs or over-the-counter medications.

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